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Here’s the answer I posted to a similar question:I can answer this one because it’s the situation I have with my son, who is now 25. He suffered a brain injury shortly after he was born and it became apparent pretty quickly that he was going to be seriously disabled, physically and cognitively. When he “aged out” of the public education system, at 22, we had a dilemma. There was no longer anything to occupy him with his days, and his dad and I were getting too old to continue providing daily care. We had researched it, so we knew there are facilities that provide care 24/7 and these are paid for by Medicaid, supplemented by Social Security. The parent must go to court to obtain legal guardianship for the adult child, then apply on the child’s behalf for Medicaid and Social security. There is no “spend-down” requirement for Medicaid in such a situation because parents are not required legally to support a child after age 18.The care facilities available to the developmentally disabled range from standard nursing homes to specialized care/living facilities. The terrible truth, however, is there are not enough vacancies in these settings to accommodate all the people needing residential care. In my home state, Illinois, I’m told there's something like 25,000 individuals waiting for an available vacancy in residential care settings. Their legal guardians must apply to these places, then go on a waiting list until a vacancy opens. Vacancies become available when a resident dies, or moves to another facility, for whatever reason. This means people are waiting months or (more likely) years for a placement. Misericordia, the most sought-after residential program in Illinois, I’ve heard, isn't even taking any more names because their wait-list is so long. Supposedly, people at the far end of the list may be waiting 20 years for a vacancy. The parents or legal guardians may die before their disabled dependent gets a home. In fact, it’s common, sadly. In such cases, the State steps in, assigns the dependent a public guardian and they move the person into any nursing home accepting Medicaid that has a bed open. I’ve heard of some people being placed in homes that are hundreds of miles from where they were, meaning any family or friends still living might never visit. These are really tragic situations.OTOH, people who are lucky get their adult child placed somewhere of their choosing while they are alive, giving them an opportunity to find higher-quality facilities for their loved ones and be present for their child’s transition into the care setting. This makes a huge difference.We were lucky. We knew someone who pulled some strings for us and we found a placement for our son not long after he completed his public education. Things started off pretty good, but their were some personnel changes and the quality of the facility suffered for it. We weren't satisfied with the care he was getting, so we put in applications to some other facilities and, just recently, we heard from one that offered us a vacancy. He’s been in placement about three years, so we were very lucky. We moved him in late October and it’s been going well. We’re pleased and he seems very happy. I wish everyone with a disabled loved one were as lucky.I wish the general public was more aware of the plight of disabled adults and their anxious families. I think if they did, more would be more sympathetic and less begrudging of taxpayers’ money that funds these services. I’ve heard some comments from people, criticizing the families of the disabled for putting the person on Public Aid and turning them over to strangers to care for them. Very few of these families have the resources necessary to pay for these services, and even the most devoted and loving parents can't provide the demanding challenge of day-to-day care indefinitely. Our bodies grow old and, ultimately, we all die. My husband and I are nearly 40 years older than our son. Despite his disability, he’s in excellent health and there's a good chance he will outlive us. We’re not foisting him on to public-funded caregivers because we're lazy or selfish. Not only can't we remain daily caregivers to him, but we want him to be comfortably situated and feeling secure in his life while we are still here. We won't have to be worried sick over what will happen to him after we die.The job of direct-care for the disabled is a hard one, and the pay to such heroes is appalling. In Illinois, the salary of direct-care-providers in 24/7 settings is a paltry $9.60 per hour! The facilities have no ability to pay their staff more, as this is what state legislators have budgeted for these jobs. Administrators don't have the dollars to increase their DCPs pay. These hard-working employees haven't had a pay increase since 2006, if you can imagine that. It's obscene. Bruce Rauner, our governor who happens to be a billionaire with no disabled family members, has vetoed all proposals for greater budgeting for these services, and, additionally, he wants legislators to approve his proposed budget that would cut funds to agencies like the one operating my son’s residence by a shocking 12%. We saw a statement issued by the administrators of the facility where our son was living previously, informing us this would slash over 800 million dollars from their operating budget. I probably don't need to tell you this would be catastrophic for these agencies and their clients. Legislators have been deadlocked well over a year in a stalemate over Illinois’ state budget. The stalemate has wreaked havoc on a wide scale with public-funded services, and there’s no light at the end of the tunnel. I lie awake in bed some nights worrying over all this, wondering how it will turn out and if some miracle will come along to rescue this miserable situation.Now there's a new presidential administration coming to the U.S., and louder and louder rumblings are being heard of eliminating Medicaid, Social Security and Medicare from many public servants supporting the president-elect. You can probably guess I’m scared to death over what will happen.This is no doubt way more than you asked or wanted to know, but I thank you for asking the question, giving me the opportunity to bring to light in a public forum the hardships families like mine must endure. The public needs to know about this.

I can answer this one because it’s the situation I have with my son, who is now 25. He suffered a brain injury shortly after he was born and it became apparent pretty quickly that he was going to be seriously disabled, physically and cognitively. When he “aged out” of the public education system, at 22, we had a dilemma. There was no longer anything to occupy him with his days, and his dad and I were getting too old to continue providing daily care. We had researched it, so we knew there are facilities that provide care 24/7 and these are paid for by Medicaid, supplemented by Social Security. The parent must go to court to obtain legal guardianship for the adult child, then apply on the child’s behalf for Medicaid and Social security. There is no “spend-down” requirement for Medicaid in such a situation because parents are not required legally to support a child after age 18.The care facilities available to the developmentally disabled range from standard nursing homes to specialized care/living facilities. The terrible truth, however, is there are not enough vacancies in these settings to accommodate all the people needing residential care. In my home state, Illinois, I’m told there's something like 25,000 individuals waiting for an available vacancy in residential care settings. Their legal guardians must apply to these places, then go on a waiting list until a vacancy opens. Vacancies become available when a resident dies, or moves to another facility, for whatever reason. This means people are waiting months or (more likely) years for a placement. Misericordia, the most sought-after residential program in Illinois, I’ve heard, isn't even taking any more names because their wait-list is so long. Supposedly, people at the far end of the list may be waiting 20 years for a vacancy. The parents or legal guardians may die before their disabled dependent gets a home. In fact, it’s common, sadly. In such cases, the State steps in, assigns the dependent a public guardian and they move the person into any nursing home accepting Medicaid that has a bed open. I’ve heard of some people being placed in homes that are hundreds of miles from where they were, meaning any family or friends still living might never visit. These are really tragic situations.OTOH, people who are lucky get their adult child placed somewhere of their choosing while they are alive, giving them an opportunity to find higher-quality facilities for their loved ones and be present for their child’s transition into the care setting. This makes a huge difference.We were lucky. We knew someone who pulled some strings for us and we found a placement for our son not long after he completed his public education. Things started off pretty good, but their were some personnel changes and the quality of the facility suffered for it. We weren't satisfied with the care he was getting, so we put in applications to some other facilities and, just recently, we heard from one that offered us a vacancy. He’s been in placement about three years, so we were very lucky. We moved him in late October and it’s been going well. We’re pleased and he seems very happy. I wish everyone with a disabled loved one were as lucky.I wish the general public was more aware of the plight of disabled adults and their anxious families. I think if they did, more would be more sympathetic and less begrudging of taxpayers’ money that funds these services. I’ve heard some comments from people, criticizing the families of the disabled for putting the person on Public Aid and turning them over to strangers to care for them. Very few of these families have the resources necessary to pay for these services, and even the most devoted and loving parents can't provide the demanding challenge of day-to-day care indefinitely. Our bodies grow old and, ultimately, we all die. My husband and I are nearly 40 years older than our son. Despite his disability, he’s in excellent health and there's a good chance he will outlive us. We’re not foisting him on to public-funded caregivers because we're lazy or selfish. Not only can't we remain daily caregivers to him, but we want him to be comfortably situated and feeling secure in his life while we are still here. We won't have to be worried sick over what will happen to him after we die.The job of direct-care for the disabled is a hard one, and the pay to such heroes is appalling. In Illinois, the salary of direct-care-providers in 24/7 settings is a paltry $9.60 per hour! The facilities have no ability to pay their staff more, as this is what state legislators have budgeted for these jobs. Administrators don't have the dollars to increase their DCPs pay. These hard-working employees haven't had a pay increase since 2006, if you can imagine that. It's obscene. Bruce Rauner, our governor who happens to be a billionaire with no disabled family members, has vetoed all proposals for greater budgeting for these services, and, additionally, he wants legislators to approve his proposed budget that would cut funds to agencies like the one operating my son’s residence by a shocking 12%. We saw a statement issued by the administrators of the facility where our son was living previously, informing us this would slash over 800 million dollars from their operating budget. I probably don't need to tell you this would be catastrophic for these agencies and their clients. Legislators have been deadlocked well over a year in a stalemate over Illinois’ state budget. The stalemate has wreaked havoc on a wide scale with public-funded services, and there’s no light at the end of the tunnel. I lie awake in bed some nights worrying over all this, wondering how it will turn out and if some miracle will come along to rescue this miserable situation.Now there's a new presidential administration coming to the U.S., and louder and louder rumblings are being heard of eliminating Medicaid, Social Security and Medicare from many public servants supporting the president-elect. You can probably guess I’m scared to death over what will happen.This is no doubt way more than you asked or wanted to know, but I thank you for asking the question, giving me the opportunity to bring to light in a public forum the hardships families like mine must endure. The public needs to know about this..

I didn't go to Harvard, but I *did* go to Cornell (where I majored in Biology), got a Master's from the University of Illinois, and spent a year of my life after graduation mopping floors and stocking shelves at Walgreens…Of course, I was in a kind of unique situation in that I graduated from the University of Illinois with a graduate degree in Biology and no money to move to one of the major biotech centers like Boston or Chicago.As in I literally didn't have the money. I *very* carefully budgeted my money through grad school and only took out as much in loans as I absolutely needed. Additionally, I spent my last semester at the University of Illinois working on my thesis and not taking our any loans at all. By the time I graduated, I was flat broke.I had relied on promises from family to help me move back to Massachusetts after I graduated, but when it came time to call in help- nobody followed through. Perhaps I didn't state forcefully enough I needed the help (I've always been a bit of a meek person when it comes to asking for favors), but promises were made and not delivered on. I ended up stuck in rural Illinois without a car, without a job, and with barely enough money to cover my rent for a few months… (and a lease I couldn't get out of early)I ended up having to take a Minimum Wage and a near Minimum Wage job- one a full-time seasonal job grading tests (making a little over $10/hr and mostly working alongside college-educated retirees working part-time and grad students moonlighting for extra money), and the other a permanent job working evenings as a cashier at Walgreens…Eventually the seasonal job ended, and despite one of my direct supervisors telling me I was “one of the best employees at the company” and being brought back for a 2nd project, I was unable to get more work there as the company didn't have any more tests to grade for several months after that 2nd project. So I became a full-time cashier at Walgreens (originally, Walgreens had offered me a full-time job as a “Wellness Guide” making more money just a couple days after I had accepted the job as a test-grader. I took the cashier job to meet them halfway, but by the time the test-grading job ended 3 months later, the manager said the funding for the position, which they had only funded on an experimental basis, had disappeared…)As a result, I was stuck working for Minimum Wage at Walgreens for 12 months trying to save up the money to move back to Massachusetts (after rent, food, bills, and taxes I barely had anything left over to put aside- even less after I temporarily cut back my hours to go work at a restaurant to make more money, and then that job didn't work out after a month due to some sketchy things that were going on there, and my being paid under-the-table: which I wasn't told about beforehand and repeatedly objected to… I then went to work at a coffee shop, where one co-worker bullied me, and her best friend, the supervisor, did nothing about it and took her side when I complained- leading to my leaving that job at the end of the 1 month training-period on the supervisor’s recommendation to not permanently hire me…)Eventually this led to my working the 3rd shift and mopping floors for the extra $1 hr this paid- which was horrible on my health (I didn't have blackout curtains and my 3 roommates would wake me up during the day while I was trying to sleep with loud noise and music…) and worse for my social relationships (prior to this I had been dating a bit, hanging out with friends, and keeping in touch with an MD-PhD student I befriended my first year of grad school, who was getting married soon and incredibly busy but still would grab breakfast or dinner with me now and then when I was on a normal sleep cycle…)Once I had the money to do it myself, family finally came through for me and helped me move rather than spending my own money (my father considered this some kind of sick lesson in self-reliance. Having already worked several jobs before this and worked my tail off in the laboratory through grad school, I very much wanted to slap him for this…) and I eventually managed to get help paying for an EMT course from my paternal grandfather (a powerful personality and the only person my father listens to…) with matching funds from my father…Nowadays, I work full-time as an EMT and do everything in my power to try to pursue my goal for the past 7 years now (before I even started grad school)— to get into medical school, earn my MD, and help people as a doctor.But I will never forget the terrible experience of the year I spent working as a cashier (not because of the work- but the abuse and disrespect from customers and the store manager, terrible pay, and bullying from peers. For instance, one of my roommates constantly held it over me and bullied me about how he was “better” than me because he worked as a patient representative at the hospital- even though he only had an MPH, got his job through connections and, honestly, because of his race, and never aspired to be anything more than his well-paid job; whereas I had earned much more difficult and prestigious degrees than he had, and was doing everything I could to reach for something better- and hoped to try and change the world as a doctor…)I got stuck somewhere I didn't want to be due to lack of support, lack of financial resources, and a broken system (for instance, no employers in biotech would bother to help me with a relocation package or Skype interview. No branch of the military would accept me due to my childhood history of asthma- except the Marine Officer program, which I got a medical waiver for but couldn't meet the physical standards to be considered “competitive” due to not being able to afford to eat well or get enough protein to bulk up, and usually being too tired after working my 2 jobs to go out running- my run times and pull-ups were the limiting factors… And med schools wouldn't give me fee waivers to apply, as my father made too much money- not to mention I couldn't afford travel or hotels for interviews if I got any…) I was eligible for government assistance programs like Food Stamps, but didn't apply to it for fear of being labeled a lazy “leech on the system”, despite working 2 jobs for little pay- especially by my father…Anybody who tells you that all you need is a strong work ethic to get ahead clearly has been living in denial of the facts of what happens to those around them, or had a very sheltered and privileged life.I worked *incredibly* hard, played by the rules, and did all the “right” things like getting a good education (despite family resistance to my attending Cornell and frequent family crises which distracted me from my studies- meaning I graduated on the last published median and probably a little below the school- wide one at the time due to the median being on an upward trajectory the last time it had been published- though well above the median for most of my classes, many of which were curved so only 20% of the class got A’s, 30% got a B+, and the remaining 50% got a B or below- in short a median of 3.17… My Cornell GPA was 3.36, though a 3.50 at RPI- where I transferred from after my freshman year, taking sophomore courses there due to having tons of A.P. Credit, and where the university median was a 3.09 in the Fall and 3.13 in the Spring for classes the year I graduated…) Yet I spent nearly 2 years struggling just to survive in rural Illinois after graduating (the first nearly 11 months were spent desperately looking for a job, and doing a few odd-jobs for people through my church to survive in the meantime…) and received *hundreds* of rejected job applications all over the Midwest (where relocation costs were lower, and I could better afford to move with a much smaller relocation-assistance package from an employer…) Most “entry-level” jobs probably rejected me for lack of work experience in related positions, or my then current unemployment, ironically…Meanwhile, I volunteered in an ER and ICU/CCU while I was in Illinois, studied for the MCAT (my father, who wouldn't help me relocate, helped me buy a set of MCAT prep books for my birthday+Christmas present…)— which I eventually scored very highly on (top 6% of scores on the score report I received at the time, later downgraded to top 7% the next year as apparently that year's test saw higher scores than anticipated…) and tried to arrange to volunteer in a research lab to no avail (the professors all said they would have to pay me given my credentials and university policy, and they didn't have funding to hire me…)In the end, there were mistakes I made, like not taking the Civil Service Exam (which, with my credentials and intellect, would have virtually guaranteed me a score high enough to get an administrative job at the University- something I didn't learn about until I was already close to leaving Illinois…) or sucking it up and applying for Food Stamps (which might have helped me afford enough protein and calories to bulk up, and save enough money to cut back my work-hours at my 2 jobs enough to work out regularly: meaning I might have then been selected for the Marine Officer Candidate School Program if receiving government assistance hadn't hurt my application by as much as my PT score gains would have helped me…) Neither of these would have directly gotten me any closer to my goal of becoming a doctor- but they might have helped me make a little more money, which could have allowed me to apply to medical schools sooner, make an earlier relocation to Massachusetts, and have started an EMT course as soon as I moved- rather than when I finally rounded up the financial help from family…It's also worth noting that a lot of this could have been alleviated by low-interest personal loans, which, with my strong Credit Score, I might have been eligible for. But that was a risk that could also have left me bankrupt or defaulting on those loans- and as a result having no shot at getting the medical school loans I eventually will need. So it was a risk I wasn't willing to take, especially as I (erroneously) believed medical schools would be able to see just how hard I was working just to have a chance to apply (one of the things I was also saving for was medical school application fees and interview travel- I applied soon after moving back to Massachusetts) and maybe at least give me a fighting chance. Instead, they treated those years in Illinois as wasted and evidencing a “lack of dedication to medicine” (which was laughable- the dream of becoming a doctor was ALL that kept me going during that time…) according to one med school, and of 20 schools, not one offered me an interview…Ultimately, I might have been too risk-averse. There were BIG risks I could have taken to escape my Minimum Wage trap. But that's the thing about Poverty- it forces you to take enormous risks to escape it (which, if they don't pay off, can leave you even worse off than before) or be trapped in it for far longer than is fair, no matter how hard you work…P.S. For what it's worth, I recently took night-classes at Harvard. Harvard was my 3rd choice undergrad school back in the day- after Cornell and MIT. I didn't get in at the time- but after having experienced one of their (Extension) courses, part of me wonders if I wouldn't have been better off there than at Cornell. At Harvard I would have been closer to home (and better able to deal with family crises), and the culture encourages more cooperative and less competitive/cutthroat behavior than Cornell, with many classes having straight grading-curves (so everyone can get an A if they work hard enough- and indeed many often do, the median GPA's at Harvard have historically been higher than at Cornell), whereas Cornell had some classes that even featured *negative* grading curves (where an 85% could become a “C” if everyone did well enough. Fortunately that didn't happen that year, but it had happened prior years in one of my classes- and the professor actually *bragged* about this to the class, and what a tough grader he was, to drive competition and intimidate us… Students absolutely refused to help each other learn, and actively sought to undermine each other in a few cases, as a result…)